People with various lung diseases came together Jan. 31 to advocate for supplemental oxygen reform.The Pulmonary Hypertension Association collaborated with the American Lung Association, Pulmonary Fibrosis Foundation and COPD Foundation for a virtual Oxygen Hill Day. Participants expressed their desire for improved access to oxygen therapy that allows them to thrive.
Supplemental oxygen is a vital component of treatment for many people with PH. Limited forms of oxygen are available to people who struggle with the physical demands of heavy oxygen canisters.
Although liquid oxygen offers the highest degree of mobility and highest quality of life for those with high-flow oxygen needs, many oxygen suppliers no longer provide it. This lack of options limits everyday activities and mobility for people with PH and others who use supplemental oxygen.
The Hill day was part of PHA’s work with other patient organizations to secure oxygen access reform.
Barbara Linser of Cincinnati, who has pulmonary hypertension, and Joyce Dillon, an Ohio resident with a rare lung disease, lymphangioleiomyomatosis, met with Sen. Sherrod Brown (R-Ohio). Linser, who has lived with PH for more than 20 years, used liquid oxygen until her oxygen supplier switched her to oxygen tanks in 2021.
She said she participated because of the importance of oxygen access to others as well as herself. “Obviously, [oxygen-access reform] would improve my life situation tremendously,” says Linser, who previously worked as a pediatric occupational therapist.
“My goal was always to help my patients be more independent and successful in their daily lives at home and at school,” she says. “The liquid oxygen system is so much better than any other system [for delivering supplemental oxygen therapy]. For kids, that means they can play and learn better. It breaks my heart that we are further handicapping kids who already struggle so much to get through the day.”
About 28 advocates from 17 states met with 19 legislative offices for the virtual event. The participating organizations targeted lawmakers who will be key to introducing oxygen-access legislation in Congress. The advocates who participate live in congressional districts represented by those lawmakers.
Urge your members of Congress to support oxygen-access reform, and use PHA’s template to tell your story. If you’d like to get monthly updates on PHA’s advocacy activities, sign up for our Advocacy Action Alert newsletter.
